NEWSFLASH: DAI GLOBAL REPORT 2021
Valuing the advocacy of people with dementia: moving dementia out of the shadows
DAI is pleased to launch a new 2021 Global Report on World Alzheimer's Day, the outcome of some important work over the last twelve months. We engaged Dr Ellen Skladzien to do this work as she has a long career of working with people with disabilities, including people with disabilities due to dementia.
“People with dementia and care partners have the right to have a say in the policies, research and support that will impact their lives. Advocacy by people with dementia and organisations has led to increased involvement of people with dementia and their families in policy, service planning, development and research. However there continues to be challenges in understanding what involvement should mean and how involvement can best be supported.
Our work on this paper enabled us to listen to the experiences of people with dementia and their families from across the globe about their experiences in involvement. It provides a snapshot on what is working well as well as some of the barriers to involvement. It is clear that people with dementia and their families want to be involved in meaningful ways that make an impact and they want this involvement to be valued."
We have added the Table of Contents as a way of quickly highlighting what is inside our publication.
Table of Contents
About Dementia Alliance International (DAI)
Acknowledgements
Introduction
Types of Involvement of People with Dementia and Care Partners
Why should people with dementia and their care partners be involved in policy, research and services?
- Involvement as a right
- Involvement which leads to better outcomes
- Involvement which brings personal benefits
Examples of International Leadership in Involvement
- UK- DEEP
- Australia- Cognitive Decline Partnership Centre (CDPC)
- Ireland- Irish Dementia Working Group
- Scottish Dementia Working Group
- United States- Early-Stage Advisory Group
- Japan- JapanDementia Working Group
- Ontario Dementia Advisory Group (ODAG)
- European Dementia Working Group
- Alzheimers New Zealand and Alzheimers NZ Advisory Group
- Dementia Advocacy Canada (DAC)
- Taiwan Dementia Advisory Group (TADA)
What do people say about their Involvement?
Reflection on Progress to Date
Where do we want to get to? Key Principles for Supporting Involvement
Conclusions
- Appendix 1: Additional resources and practical guides on involvement
References
Endorsements
Also available to download on our website publication page.
About the author:
Dr Skladzien is an advocate for meaningful involvement of people with lived experience in research, policy and service development. This paper was completed as independent work separate to her other roles.
Ellen is currently the CEO of Down Syndrome Australia and is also the past Executive Manager of Policy and Research at Dementia Australia (previously Alzheimer's Australia). She has also been involved in the Consumer Advisory Group at the South Australian Health and Medical Research Institute.
Ellen was actively involved in setting up the Dementia Australia Dementia Advisory Group in 2013, when she was working for Alzheimer's Australia when this committee was founded.
Suggested citation:
Skladzien, E., 2021, Valuing the advocacy of people with dementia: moving dementia out of the shadow, Dementia Alliance International.